The Alphabet of Happiness

Before me was a fully sentient person who for four years had been silent, pinned down inside the ruins of her body.

The story of my life
Syllable by syllable
From the hospital:
At first I said Oy vey I’m going to die!
Then
Oy
I’m going to live-Marcie Alter

The first time I stepped foot into Marcie’s world, it was like finding myself in the classic nightmare of paralysis: the dreamer needs urgently to escape but suddenly can’t move and can’t make a sound.

It was a friend of my daughters who had suggested the visit – she thought this was someone I’d like to know, which turned out to be an understatement – but visiting a sick person in a Catholic hospice…it wasn’t in my comfort zone. (Walking by sometimes on my way to the Kotel, I’d been surprised to see observant Jewish women going in through the cathedral-like entrance, and wondered whom they could possibly be visiting. Little did I know that half the patients in there are Jewish.)

By the time I finally passed under that archway myself, months had gone by.

Although her body is inert and immobile, she is fully conscious and "herself," mentally and emotionally.

A nun directed me to Room 25. Averting my eyes from the curled-up human form on the bed to my right – an ancient-looking woman of indeterminate age, her dark hole of a mouth fallen open – I pulled up a chair by the bed in the opposite corner, alongside another visitor. Emuna Witt was reading aloud the morning blessings, to which the young woman who lay next to her, flat on her back, attached to various tubes and medical paraphernalia, was silently giving slight nods to signal Amen.

So this was Marcie Alter. She greeted me with her eyes.

A bunch of stuffed animals lay in a heap at the foot of her bed. Taped up all around the wall were drawings and greetings from friends and family, handwritten quotations from Torah, and photographs of smiling faces.

Little by little in the coming weeks, by pointing to letters of the alphabet, Marcie would answer my questions about the events which had brought her here. A single mother and graphic artist in her thirties, she had made aliyah in 2003. In 2006, she was left paralyzed from the neck down after failed surgery for a brain aneurism. Although her body is inert and immobile, she is fully conscious and "herself," mentally and emotionally. She retains slight spastic-looking movement in her forearms and four of her fingers, and can shake and nod her head. Aside from this (and I explicitly mention the following because even in her presence, it takes visitors a while to grasp the extent of her disability) she is unable to eat, drink, speak, move her legs or feet, or use her hands. For example, she can’t hold a book or turn a page, or use a writing utensil. If she has an itch, she can’t scratch it (nor tell anyone else to do so). If, when being pushed in her wheelchair, one of her feet happens to fall out of position and drag on the ground as the chair moves forward, she can’t lift it. When her scarf slips down over her eyes, she can’t adjust it. She breathes through a surgically created hole in her throat; when the opening gets clogged, she must wait for someone to clear away the mucous. Since her vocal chords and facial muscles are included in the general paralysis, she can’t cry, or laugh.

Her lips sometimes press together and lengthen slightly; those who know her recognize that at these moments, she’s smiling.

It must have been about 20 years ago that The Jerusalem Post carried a report on survivors of an earthquake in Armenia. Pinned under the ruins of his house in total darkness, inaudible to rescuers, one man couldn’t move, if I recall correctly, for ten days. A shattered water pipe happened to be leaking drops of water onto his face, some of which he was able to catch by leaving his mouth open, which saved his life. I remember how trying momentarily to imagine myself in such a situation almost made me want to scream, while here before me was a fully sentient person who for four years had been silent, pinned down inside the ruins of her body.

Later that morning, Emuna introduced me to the handmade alphabet board that Marcie uses to converse. As someone holds the rectangular piece of cardboard firmly before her, she spells out words by pointing in her distinctively shaky manner to the letters, one by one. The ABCs are written out in capitals, with black magic marker, and below them appear the numbers from zero to 10. Below that are the words MOM, BEN, BROTHER, THE, AND, END (for end of word) and THANK YOU.

To sit there next to Marcie was to suddenly confront my own life’s fabulous embarrassment of riches.

Two of the photos on the wall caught my attention – one of a curly-haired, laughing young man and the other, of a woman in her twenties, in a striped maternity dress, gazing clear-eyed and steadfast into the camera. “Is that your son?” I asked her. Marcie nodded, indicated that she wanted the alphabet board, and pointed to “BEN.” “And that one? In the striped dress…? Is that…?”

She nodded emphatically.

“You?”

Her eyes smiled

To sit there next to Marcie was to suddenly confront my own life’s fabulous embarrassment of riches, and grand panoply of complaints, and to feel obscenely undeserving of my own good fortune.

A few months went by and it was the fourth night of Chanukah. For various reasons I was home alone, and the loneliness of lighting the candles by myself was creeping up on me. I prepared the menorah, lackadaisically, catching sight of my dark reflection in the glass of the window as the four flames flickered. In all the happy-looking windows of the building across from me, rows of little yellow lights were burning.

When the candles went out after half an hour, my heart was cast abruptly adrift. What should I do with the long winter evening ahead of me, out on that frightening, empty sea?

The lights along the second-floor hallways of the hospice were already dimmed for the night when I arrived. I'd never been here at night before, and as usual, tried not to glance intrusively into the rooms as I walked by fast on my way to Marcie's room.

At the door, I was unsure if she was still awake. It was only 8:00, but here, too, the overhead lights had been turned off. I took a few steps inside. In the semi-darkness she lifted a forearm and waved it jerkily up and down.

I sat down by the bed and told her how I was doing – not great – and then, as usual when telling her about any of my own difficulties in life, felt ridiculously, reprehensibly petty and spoiled. “Marcie, you know sometimes when I’m walking down the street I think to myself, what would Marcie feel if she were doing this, and for a few moments, I exult in being able to walk, and talk, and move. I exult intensely. But of course my appreciation doesn’t last long, and soon I’m taking it all for granted again. I know that shouldn’t surprise me, but I keep expecting that having seen some of what you go through every hour – because it’s so much more difficult, and qualitatively different from anything in my own life – that it will change my perspective once and for all and I’ll just be grateful from then on. But that’s not what happens. I still suffer over whatever I suffer. Even though I realize it’s so slight in the grand scheme of things.”

She gestured towards the alphabet board and I held it for her as she spelled out: everyone has his pekele [baggage].

“Don’t you feel annoyed at people, that they don’t appreciate what they have?”

She shook her head, no. Me too

I didn’t understand.

Wish I appreciated more

“You mean before you got ill?”

She nodded.

“How do you get through the day, Marcie? You must go through a lot of – you know that phrase? – ‘long dark night of the soul.’ Right?"

A wry expression in her eyes said, "You got it." She pointed again to the letters. Used to pray to die in my sleep

“You used to? You mean you don’t anymore?”

She shook her head no.

“What changed?”

She rolled her eyes upward and lifted a forearm, as if to say, who knows? Then she spelled: Today one of my lows a new nurse

"She didn’t know how to do things?"

It hurtI was angry.

“Marcie, I just can’t imagine such a thing. And things like that must happen all the time. When I first met you, I thought you must be different from other people, and that accounted for your ability to bear it.”

She narrowed her eyes in question, not sure what I was getting at.

"I try not to think about what I am missing."

"Now I know you’re just like all of us. So what I want to know is, really, how you manage."

I try not to think about what I am missing.

These words struck me as if she’d just tossed an enormous key my way. All I had to do now, supposedly, was turn the key. But where was the lock, or even the door? "You don’t think about what you're missing…that's amazing. That’s what people can’t stop thinking about. But you're missing…everything, at least the way most of us would see it. So what do you think about? A stupid question, I know, but really, what do you think about?"

She jerkily lifted a forearm, pointing upwards.

“God?”

She nodded.

"You know, my son-in-law told me that when you visit someone in a hospital, according to Jewish law one is not to stand higher than the person's head, because the Shechina (Divine Presence) is over the bed of a sick person."

I feel it

“You do, Marcie, really?””

I don’t feel alone

On the table at the foot of Marcie's bed, there was a menorah, unlit. "Marcie, shall I light the Chanukah lights?"

She nodded, so I got a match from the nurses' office. For a while we watched the candles together, and in some inner corner of my mind, a shy little thought flickered: This is happiness.

This article is an excerpt from an article that appeared originally in Ami Magazine.

The opinions expressed in the comment section are the personal views of the commenters. Comments are moderated, so please keep it civil.

Visitor Comments: 29

(29)
ruth housman,
December 11, 2012 11:00 PM

this is powerful

almost too powerful. I watched a video recently, again, that shows a young man named Nick, born without arms and legs, jsut a torso, and he can do so much, dives, plays ball, but most of all, it's an attitude, an indomitable attitude that is so much about love. You cannot meet him and not weep.
Is he, and is Marcie, an angel, sent here to teach us lessons? And if so, as angels, I want God to be extra kind to them, as in it feels like too much sometimes. Just too too much.
This story has got to be about love. What else could it be, about? Perhaps the only true path is empathy, as in, they are us. We are them.

(28)
Anonymous,
December 11, 2012 10:02 PM

Best of intentions

My comment does not relate to the content of the story but rather the approach. I find this approach of taking extreme cases and comparing and chastising ourselves depressing and guilt-inducing. It not to say that if one is experiencing some degree of suffering or discomfort in a certain area of one's life it is not possible to gain perspective and a sense of gratitude by bringing to mind persons facing greater challanges in similiar areas. Still on a positive note, it is possible to engender gratitude by noticing the many daily kindnesses and yeshuot that Hashem bestoys on us. This approch seems to be another version of self-bashing. In general we have seen that this type of mussar doesn't work or worse, has an adverse effect in this generation. In fact we've been bashed enough and would benefit from the positive, healing approach of seeing and strengthening the good points within ourselves in order to come close to Hashem. Look towards the LIGHT inside an outside of us. Isn't this in line with Hillel's shita of lighting the menorah? We have enough cruel enemies and detractors doing the job. We needn't be our own.

(27)
Catherine,
December 11, 2012 2:09 PM

Humbled~

(26)
Anonymous,
September 2, 2012 1:00 AM

this is heartbreaking for me. i knew Marcie 25 years ago and have just found her again through Facebook. When i think of all the things we got up to, and the fun we had.... Sarah, you have written that brilliantly. it should never have happened though. not to marcie!

(25)
Anonymous,
March 5, 2012 9:33 PM

Please, please, can you publicize Marcie's hebrew name so we can all daven for this wonderful woman

This was such an inspirational article. Please publicise Marcie's Hebrew name so we can all daven for this tzadekes

(24)
Renee Bryer,
January 19, 2012 5:57 AM

Makes me ask myself how I can be of help to others.

Inspirational and thought provoking. Reminds me to be grateful and focus on the positives. Also to visit the sick!

(23)
Anonymous,
January 3, 2011 12:56 AM

From this article I glean that to be in the presence of a person like Marcy (and you know Shechina is there) is a blessing. To be unable to move and speak she has become a beacon in so many ways from this article to many of the responses. The Presence of the Devine and the Chanukah candles gleaming in that room must have been beautiful to see and feel. Thank you for this article. The statement... there but by the grace of G-d go I is in this life multiple times every day. Oh all of of should feel so grateful for every part of our bodies that work and our minds and souls too. Here, Marcy is blessing everyone that comes to see her and care for her. Baruch Ato Adonoy is enough to be on the lips of every person and I know that I say it a lot. Just think, "praised are you, Hashem" issuing from all of us multiple times each day. Only with G-d can any of us understand the many blessings we have from moment to moment. I believe that I will kvetch less! I will feel better! :) Brura

(22)
Miriam Adahan,
January 2, 2011 8:57 PM

Inspiring

This was so inspiring! Thank you. We need constant reminders to be appreciative for all that we have.

(21)
Ann Brady,
January 2, 2011 7:19 PM

Such Beauty

I loved this piece, Sarah, you wrote it so well and lovingly. God has blessed Marcie and you by each other's love.

(20)
Anonymous,
December 30, 2010 8:10 PM

Todah rabah

Address one of my greatest fears - not being able to move. As a nurse, I have been blessed by HaShem by caring for others with similar physical problems and wondered how I would react in their place. Focusing on HaShem is the only way any of us can truly live.

(19)
JAIME ARANGO HURTADO,
December 30, 2010 4:32 PM

G-D BLESS YOU

(18)
Anonymous,
December 29, 2010 8:10 AM

Truly inspiring. Brought tears to my eyes. Thank you so much!

(17)
Rachel,
December 28, 2010 11:25 PM

intensely beautiful experience

An intensely beautiful experience even to read this. I May Hashim continue to uphold Marcie and bring her comfort in her distress .
I will share parts of this with my children and we will remember again that our joy and strength and contentedness are found in basking in Hashim's presence, no matter what the other circumstances of our lives.

(16)
zehava rochwerger,
December 28, 2010 11:19 PM

How very courageous of Sarah Shapiro to write this article. She introduced Marcie a religiously inspiring and brave woman with honestly and sensitivity . When she shares her experience and perceptions I as a reader feel I am right there with her.

(15)
Anonymous,
December 28, 2010 10:27 PM

A story about my hero Marcy

Marcy changes my life every time I see her. I have countless stories about how, but I'll share one. At Purim time a few years ago, she gave out these cards to all who came to see her that said the hardest part about being here is that I can no longer do so many of the mitzvos. So please, this year for Purim can you take on a special mitzvah as a gift to me. I asked her what she wanted to me to take on, and she said to eat on shabbos with the proper intent. The impact this had on me is too big for words.

(14)
Rachel,
December 28, 2010 6:23 PM

Marcie's Name

Marcie's hebrew name is Emuna Nitzchia Yehudit bat Tema. She is truly one of the most amazing people I know; I have been blessed to learn from and with Marice while I was spending time in Israel.

(13)
ilana loeb,
December 28, 2010 11:44 AM

I love you Marcie!

I am so blessed to have you in my life.
~ilana

(12)
Nechama,
December 28, 2010 12:27 AM

No Words

Wow.
Thank you.

(11)
,
December 27, 2010 4:48 PM

I'd rather die

(10)
Miriam,
December 27, 2010 3:46 AM

excellent portrayal of a hospice visit

I found this article so interesting because I too visit patients who are in hospice care, but the patients I visit are elderly (mostly). Here you described the trials of a woman who at a young age became so so severely disabled, yet her mind was sharp and intact.. and she retained her enormous strength in G-d. Your article shows me how you gained so much from spending time with a person who has experienced challenges. Here the author befriended and connected to the patient, and learned some powerful lessons in self-acceptance, tolerance and patience, and belief in G-d.... I loved the way so much can be conveyed through the communication board. It is just amazing!! Excellent job at telling this story. Thank you, Sarah.

(9)
Marianne,
December 26, 2010 11:30 PM

Thank you for the wake up call

Thank you so much for your most welcome words. I am truly blessed to have read what you said and Marcie's words. I am also partly an invalid and it hurts to see the world going by and I am not really a part of it. I thought I was for awhile but it seems the devil stole that away from me, too but maybe it was G-od's best for me? Thank you again for reminding us that others have it worse than we do.... Marianne

(8)
Anonymous,
December 26, 2010 11:26 PM

What is Marcie's Hebrew name & mother's name...

...so that we might pray for her?

(7)
MalkaG,
December 26, 2010 10:41 PM

Gratitude is all about Attitude

I've been exercising my gratitude muscle for the past two years now. Every morning I write down 3-5 things that I am grateful for, and embarrasing as it sounds, sometimes it's hard to come up with even two things to be grateful for. Thanks for changing my gratitude attitude . It's all about not thinking about what we're missing, because truthfully, we're not missing anything. If there was something we needed G-d would have a way for us to have what we need. Yes, there are times when we have to ask for our 'needs' to be met, but if they're not met, then we don't need them. Thank you G-d for my 'pekele of tzuris', I can handle what you send me, because I'm not missing anything! I'm truly grateful!

(6)
raye,
December 26, 2010 7:47 PM

Perspective

This article sure put things into perspective for me. I am going through some extremely trying experiences, or so I thought. I even landed in the hospital. But nothing I saw or heaed there compares with what Marcie has overcome and risen above.

(5)
ruth housman,
December 26, 2010 5:56 PM

what alters us: Marcie

This is a poignant article with a deep, enduring message. There is another article on Aish I have just read about Stephen Hawking. This physicist is less confined than Marcie, but he has endured, a long terrible illness, and he depends on computer assisted everything, and the love of those around him, the support and encouragement of family and beyond.
Marcie's greatness, is what endures, through all this suffering, herself a light, herself a menorah to those who spend time with her, who truly feel, then, how it is to be grateful, to encounter another day, to have arms for wings, and feet for flight, to have speech for communication.
Those who are in this Catholic hospital who are Catholic, they kneel at altars, and this, this living alter, is something to cherish, a life that is still a glow, despite and through the darkest nights. Marcie found her way to God, and she knows. And perhaps, it is her beauty, that is in itself a great truth for us all. We are blessed to know her and to know about her!

(4)
Betty Levy,
December 26, 2010 5:38 PM

Inspirational

What a lovely and inspirational article. I admire the spirit and faith of Marcie under such stress and loneliness. Her faith in G-d is what sustanined her.

(3)
Heather,
December 26, 2010 4:45 PM

Thank you for sharing the light of truth. God loves people.

This article is so illuminating, not just from viewpoint of Hanukah, but from how worth while every human being is, may G-d grant us the strength to show the world His love as Marcie is even in her trapped soul state.

(2)
Sarah Goldstein,
December 26, 2010 4:04 PM

Please keep writing Sarah Shapiro

You expressed my feelings so well. When I visit my Mom, with Alzeimer's, in the old age home, I see and talk to others who are mentally there but cannot express themselves. Wish others would visit these shells of a person.

I've been striving to get more into spirituality. But it seems that every time I make some progress, I find myself slipping right back to where I started. I'm getting discouraged and feel like a failure. Can you help?

The Aish Rabbi Replies:

Spiritual slumps are a natural part of spiritual growth. There is a cycle that people go through when at times they feel closer to God and at times more distant. In the words of the Kabbalists, it is "two steps forward and one step back." So although you feel you are slipping, know that this is a natural process. The main thing is to look at your overall progress (over months or years) and be able to see how far you've come!

This is actually God's ingenious way of motivating us further. The sages compare this to teaching a baby how to walk. When the parent is holding on, the baby shrieks with delight and is under the illusion that he knows how to walk. Yet suddenly, when the parent lets go, the child panics, wobbles and may even fall.

At such times when we feel spiritually "down," that is often because God is letting go, giving us the great gift of independence. In some ways, these are the times when we can actually grow the most. For if we can move ourselves just a little bit forward, we truly acquire a level of sanctity that is ours forever.

Here is a practical tool to help pull you out of the doldrums. The Sefer HaChinuch speaks about a great principle in spiritual growth: "The external awakens the internal." This means that although we may not experience immediate feelings of closeness to God, eventually, by continuing to conduct ourselves in such a manner, this physical behavior will have an impact on our spiritual selves and will help us succeed. (A similar idea is discussed by psychologists who say: "Smile and you will feel happy.")

That is the power of Torah commandments. Even if we may not feel like giving charity or praying at this particular moment, by having a "mitzvah" obligation to do so, we are in a framework to become inspired. At that point we can infuse that act of charity or prayer with all the meaning and lift it can provide. But if we'd wait until being inspired, we might be waiting a very long time.

May the Almighty bless you with the clarity to see your progress, and may you do so with joy.

In 1940, a boatload 1,600 Jewish immigrants fleeing Hitler's ovens was denied entry into the port of Haifa; the British deported them to the island of Mauritius. At the time, the British had acceded to Arab demands and restricted Jewish immigration into Palestine. The urgent plight of European Jewry generated an "illegal" immigration movement, but the British were vigilant in denying entry. Some ships, such as the Struma, sunk and their hundreds of passengers killed.

If you seize too much, you are left with nothing. If you take less, you may retain it (Rosh Hashanah 4b).

Sometimes our appetites are insatiable; more accurately, we act as though they were insatiable. The Midrash states that a person may never be satisfied. "If he has one hundred, he wants two hundred. If he gets two hundred, he wants four hundred" (Koheles Rabbah 1:34). How often have we seen people whose insatiable desire for material wealth resulted in their losing everything, much like the gambler whose constant urge to win results in total loss.

People's bodies are finite, and their actual needs are limited. The endless pursuit for more wealth than they can use is nothing more than an elusive belief that they can live forever (Psalms 49:10).

The one part of us which is indeed infinite is our neshamah (soul), which, being of Divine origin, can crave and achieve infinity and eternity, and such craving is characteristic of spiritual growth.

How strange that we tend to give the body much more than it can possibly handle, and the neshamah so much less than it needs!